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Theoretically everything is fine...
#1
Theoretically everything is fine...
Hey y'all

New to the forum, but I've been using a CPAP since July. I'd say I'm used to it by now. I have no issues falling asleep with the mask, I rarely rip it off in the middle of the night now, and I haven't really been having issues with leaks either. At the beginning of October, my ahi was averaging about 7 or 8 and I had noticed no improvements in how I was feeling. At that point, I had not had a titration study done because insurance decided to just give me an automatic cpap and see what happened, so my machine was set to 4-20 and usually settled around 12. Anyways, long story short I got a titration study done and they decided 4-6 was the optimal pressure. I'm aware this is like, ridiculously low. But my ahi has lowered to just under 5 and I'm having less central apneas so I guess I'm just weird. (Not that this is news to me.)

The thing is, during the titration study my ahi was 0.2. I had one apnea (central) during the entire 6 hours I was asleep. So when I had the virtual appointment to hear how the study went, they were like "Yay! Everything is fixed now!" And then I was like, okay but in the two nights since then I've been using the exact same settings as in the lab and my ahi has averaged 5.23, which is better than before but is also significantly different than 0.2 and everything is not fixed and I'm still tired. Anyways, after the person I was talking to consulted 3 different people we decided that I was "complicated" and I decided to schedule another appointment in four weeks (which is coming up soon) so that we'd have more data to look at.

I'm not really looking for advice, but if anyone has any thoughts I'd love to hear them. My sleep doctor and his team have been really great with checking in and really listening and trying to get things figured out. My ahi has fallen to just below 5 (last week has averaged 4.6) and I'm maybe slightly less tired, but that could also be the new depression treatment (TMS aka firing really strong magnetic pulses at my brain to make the Stop Being Depressed Neurons activate). I've just been feeling discouraged and I was wondering if this type of thing has happened to anyone else. 

If you've read this far, thank you. I appreciate it. I feel like I've been playing medical whack-a-mole what with all the appointments I've been going to and the painfully slow progress.
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#2
RE: Theoretically everything is fine...
The best thing to do is download OSCAR from the top of the site, it is totally free. Post the results (charts) and the experts here can look at them and give you an informed reply.
Apnea (80-100%) 10 seconds, Hypopnea (50-80%) 10 seconds, Flow Limits (0-50%) not timed 
Cervical Collar     Dealing w DME     Chart Organizing
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#3
RE: Theoretically everything is fine...
Reading your description is half the story. The other half is the sleep study, the titration report, and ongoing OSCAR data. I suspect central apnea are more than you thought at times. CA are consistently inconsistent, as in up or down nightly. The study info helps define these CA events, and dictate how we treat them. We need that data to help better.

PS If you're in the USA you're legally able to get your copy of these reports via HIPAA.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#4
RE: Theoretically everything is fine...
Yeah I have OSCAR already. I'll try to get the charts together tomorrow (hopefully). Don't really feel up to figuring out all that tonight. Thanks for your help.
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#5
RE: Theoretically everything is fine...
Okay, so I have the OSCAR screenshot of last night's data and the summary of the titration study. Not sure if I did the OSCAR screenshot right; it was hard to fit all the graphs. I'm going to have to look for/ask for the original study results (and also possibly more detailed data from both studies? Is that something I can get and would it be useful?).


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#6
RE: Theoretically everything is fine...
Who set at 4 and 6? That is way to low. Your low shout be at 7 and a high at 9. This would be my suggestion. Do you know how to set your pressures? You can download a manual for your machine from the top of the site.
Apnea (80-100%) 10 seconds, Hypopnea (50-80%) 10 seconds, Flow Limits (0-50%) not timed 
Cervical Collar     Dealing w DME     Chart Organizing
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#7
RE: Theoretically everything is fine...
I'll go with Stacy's advice and add the flow limitation is a killer for comfort and hypopnea. Minimum pressure 7.0, maximum pressure 14.0 and EPR full time at 3. I would really like to see your titration study results with personal data redacted. There is no way a pressure of 4-6 works.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#8
RE: Theoretically everything is fine...
Ditto on the pressure bump.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#9
RE: Theoretically everything is fine...
Thanks for the suggestions, everyone. I didn't feel super comfortable making a big change all at once (probably irrational anxiety), so last night I only changed it to 4-8. Attaching OSCAR screenshot. AHI was lower than average. I noticed that it pretty much immediately (after ramp which I will probably try to turn off) went up to max pressure and pretty much stayed there. Which makes sense because when the pressure was wide open it tended to like to be around 12.

Tonight I am thinking of trying 6-12 with EPR still off to see what happens. I could probably put the min higher, but I want to at least try a little bit longer to stay somewhat in the range they decided after titration, if only to try to convince the doc that I'm not going completely rogue when I have my followup in 2 weeks.

Sleeprider, the study summary I attached earlier is all I have from the titration study. When I woke up in the morning the tech doing the study said that a pressure of 5 was perfect. I don't know why or how he came to that conclusion.


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#10
RE: Theoretically everything is fine...
Do what makes you fell comfortable, but 4 is the lowest the machine can go.  Most people can not stand that low of a pressure - they usually report it is like trying to breath through a straw.  An adult needs at least 7 to feel as they are breathing normally.
Apnea (80-100%) 10 seconds, Hypopnea (50-80%) 10 seconds, Flow Limits (0-50%) not timed 
Cervical Collar     Dealing w DME     Chart Organizing
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